Melanoma Research Foundation Stewardship Report
RESEARCH EDUCATION ADVOCACY
The MRF’s mission is to eradicate melanoma by accelerating medical RESEARCH while EDUCATING to and ADVOCATING for the melanoma community.
This critical work is made possible by the steadfast commitment, constant innovation and unwavering generosity of a community united in the fight against melanoma.
Guided by the principles of responsible stewardship and continued progress, this report shares some recent highlights of what we have accomplished together.
Table of Contents
Rare Subtypes CURE OM....................... 7
Research ........................... 2
Rare Subtypes Pediatric.......................... 8
Education ......................... 4
Total grant funding now over $18.5 million and awarded through:
21 grants awarded in 2019, totaling $1.583 million . Includes:
• 1 CURE OM Initiative • 1 MRF Breakthrough Consortium — Bristol-Myers Squibb Young Investigator Award
Established Investigator Awards
Established Investigator Awards
Career Development Awards (including one for Melanoma Brain Metastases)
Career Development Awards
Medical Student Awards
Medical Student Awards
PUBLICATIONS AND SCIENTIFIC MEETINGS
Research funded by 2017 Career Development Award. Recipient published in Nature Genetics. “The Genetic Evolution of Metastatic Uveal Melanoma” by Hunter Shain, PhD. www.nature.com/articles/s41588-019-0440-9
Partnered with Moffitt Cancer Center to host the Second Summit on Melanoma Central Nervous System (CNS) Metastases We had two papers published from the Moffitt meeting. 1. MRF/NCI SPORE workshop submitted second white paper on leptomeningeal brain metastases. “Melanoma central nervous system metastases: An update to approaches, challenges, and opportunities.” https://onlinelibrary.wiley.com/doi/10.1111/pcmr.12771 2. SUBMITTED: “Leptomeningeal Disease in Melanoma Patients: An update to treatment, challenges, and future directions” to be published in Pigment Cell and Melanoma Research .
Advocate reviewers added to Scientific Advisory Committee grant review process to incorporate the patient perspective.
CONVENED MEETINGS AT MAJOR RESEARCH CONFERENCES
American Society of Clinical Oncology May 31 – June 4, 2019 • MRFBC Meeting The Society for Melanoma Research November 20 – 23, 2019 • CURE OM Science Meeting • MRF Scientific Advisory Committee Meeting — Updating 2016 white paper
Regular meetings of scientific leadership, including MRF Scientific Advisory Committee, Pediatric Melanoma Steering Committee, Mucosal Melanoma Steering Committee, and CURE OM Registry Steering Committee.
HIGHLIGHTS LAUNCHED A NEW WEBSITE TO BE THE PREMIER SOURCE FOR MELANOMA INFORMATION SEEKERS.
HOSTED 8 PATIENT SYMPOSIA ACROSS THE U.S. IN 2019 These symposia include information and meetings for patients with skin, ocular, mucosal and pediatric melanoma.
l Over 3 million visits in 2019 to
CHAPEL HILL, NC
l Expanded Education Institute with addition of new animated videos, webinars, educational literature and online courses
LOS ANGELES, CA
PUBLISHED TWO NEW INFOGRAPHICS ON MELANOMA CLINICAL TRIALS AND CREATED NEW “ABCDE” GUIDE TO SELF-SCREENING, #EYEGETDILATED POSTCARD AND OCULAR MELANOMA PATIENT GUIDE.
Blizzard Industries Blizzard Industries
Whyconsideraclinical trial formelanoma?
ABCDEs OF MELANOMA
Asa result, fewerpeoplearedying frommelanoma, even thoughmore peoplearebeingdiagnosedwith it.
In2018, the researchers whodeveloped immunotherapy for melanomawon the NobelPrize inmedicine .
Thesenew treatments include: • Immunotherapies, which boost thebody’s immune system to findand attackcancer • Targeted therapies, which targetandattack theparts ofmelanomacells thatmake themdi erent fromnormalcells
AGUIDE TO SPOTTINGMELANOMA
Doctor Doctor Dentist Dentist
Expected deaths from melanoma peryear
newmelanoma treatmentshave becomeavailable.
Thesebasicguidelines are usedbymanydermatologists to help identifymelanoma, thedeadliest formof skin cancer.
Patientssay theydon’t takepartbecause: • Theyaren’tawareofclinical trials • Theydon’t thinkclinical trialshappen where they live • They thinkclinical trialsareonly for patients ifstandard,approved treatmentsdon’twork
6outof10 clinical trials forcancermedicines (oncology trials)don’tenrollenoughvolunteers.
Catchingmelanoma early couldmean thedifferencebetween life and a life-threatening cancer.Knowingwhat to look for andperforming regular self-skin examsmay help youbecomemore awareof unusual spots that shouldbebrought to the attentionof adermatologist. If younoticeanunusual spotora spot thathasoneormoreof these characteristics,make anappointmentwithadermatologist—preferablyonewhohasexperiencewithmelanoma.
Thismeansnew treatmentscan't complete testingandbemade available topeoplewithcancer.
Only1outof20peoplewith cancer takepart inaclinical trial.
Dilated Eye Exam Dilated Eye Exa
Youmaygetaccess toapromisingnew treatment that isnotavailable to thegeneral publicby takingpart inaclinical trial.
Insurveysofpeoplewhohavevolunteered forclinical trials:
ASYMMETRICAL SHAPE: Melanoma lesions areoften irregular,or not symmetrical, in shape.Benignmoles are usually symmetrical.
said takingpart inaclinical trial is notatall disruptive or notverydisruptive to their generaldaily routine
You’llgetachance tohaveall yourquestionsanswered beforeyoudecide to takepart. Aeryou join,youcan leavea clinical trialatany time,and forany reason.
MISSING A CHECK? MISSING A CHECK?
BORDER: Typically, non-cancerousmoleshave smooth, even borders.Melanoma lesionsusuallyhave irregularborders that aredifficult todefine.
said thecare they receivedduringaclinical trial was thesame or better compared to theirusualcare
Only3outof10 peoplesay theirdoctorshavediscussed medical researchwith them.
would recommendvolunteering to familyor friends
COLOR: Thepresenceofmore thanone color (blue,black, brown, tan,etc.)or theunevendistributionof color can sometimesbe awarning signofmelanoma.Benignmoles areusually a single shadeofbrownor tan.
Volunteers’ top3 reasons for takingpart in clinical trials: 1. Helping toadvancescienceand treatment 2. Getting better treatment 3. Helpingothers
Search www.melanoma.org/clinical-trials andspeak toyourdoctoraboutclinical trials thatmightbeagood fit foryou. Manymelanomaexpertsbelieve thatclinical trials couldbeyour firstandbest treatmentoption.
facebook.com/CureOM @MRFCureOM @curemelanoma facebook.com/CureOM @MRFCureOM @curemelanoma
DIAMETER: Melanoma lesions areoftengreater than 6millimeters indiameter (about the sizeof apencileraser).
EVOLUTION (ORCHANGE): The evolutionof yourmole(s) hasbecome themost important factor to considerwhen it comes todiagnosing amelanoma. Knowingwhat is normal forYOU could save your life.
• Surveillance,Epidemiology,andEndResults (SEER)Program,2019.CancerStat Facts:Melanomaof theSkin.NationalCancer Institute. • LaboratoryCorporationofAmerica,2015.AddressingEver-risingCost inConducting ClinicalTrials.Covance, Inc. • InstituteofMedicineForumonDrugDiscovery,Development,andTranslation,2010. ClinicalTrials inCancer. InTransformingClinicalResearch in theUnitedStates: ChallengesandOpportunities:WorkshopSummary.NationalAcademiesPress.
• TheCenter for Information&StudyonClinicalResearch Participation (CISCRP),2017.Perceptionsand InsightsStudy, PublicandPatientPerceptionsofClinicalResearch.Report on theParticipationExperience. • ZogbyAnalytics/Research!America,2013.NationalPoll: ClinicalResearch.
*It is important tonote thatnotallmelanomas fallwithin theseparameters.
Hill Day, March 9–11, 2019
Meetings with lawmakers
l On January 27, 2020, in partnership with the FDA, hosted the first ever Patient-Led Ocular Melanoma Listening Session. 11 ocular melanoma patients advocates spoke, along with Dr. Richard Carvajal, Columbia University Department of Medicine.
Partners in advocacy featured in program
l Created new partnership with the National Organization for Rare Disorders (NORD). – Took part in NORD’s #RareCancerDay on October 1, 2019.
l Expanded partnerships with organizations including American Cancer Society Cancer Action Network (ACS CAN), Melanoma Research Alliance and the National Council for Skin Cancer Prevention (NCSCP).
The 2019 meeting of the Global Coalition for Melanoma Patient Advocacy took place in Salt Lake City, Utah, USA.
Engaged 346 advocates in a letter writing campaign in support of increasing Department of Defense melanoma research funding to $20 million.
Supported a 6% increase in National Cancer Institute funding, totaling $6.5 billion in FY20.
As a direct result of 2019’s Hill Day efforts, we confirmed 23 congressional signatures supporting Representative Carolyn Maloney’s letter to the appropriations committee helping to secure $20 million in defense-funded melanoma research. MRF Advocacy Officer Cassie Beisel appointed Co-Chair of the National Council on Skin Cancer Prevention’s (NCSCP) Skin Smart Campus Initiative (SSC).
Supported the NIH’s Office of Rare Disease Research.
Supported Access to Care and protection of individuals with pre-existing conditions.
Submitted comments on the FDA’s Proposed Rule on Sunscreen.
Opposed the repeal of the Tanning Tax.
Supported passage of the Deferment for Active Cancer Treatment Act.
In partnership with the FDA held the first ever Patient-Led Ocular Melanoma Listening Session.
Supported a $2.6 billion overall funding increase for the National Institutes of Health.
Supported NC state bill for funding for the Huntersville Ocular Melanoma Study.
Nominated 17 melanoma advocates to serve as peer reviewers for the Congressionally Directed Medical Research Program (CDMRP) Melanoma Research Program (MRP).
CURE OM RARE SUBTYPES
Launched the Ocular Melanoma Treatment Center Collaborative Coalition
CURE OM HOSTED: 8TH ANNUAL EYES ON A CURE: PATIENT AND CAREGIVER SYMPOSIUM April 5–7, 2019
l Eight interdisciplinary medical centers and academic institutions dedicated to bringing patients the most up-to-date information, and to sharing the latest research and best practices in OM treatment and psycho-social developments. l Two meetings in 2019 with presentations including: – Ocular Melanoma: A Psycho-Social Approach – Clinical Trials Overview
“I am so grateful for the thoughtful preparation that went into the weekend, and the professionalism and compassion demonstrated by all who presented. Thank you!”
the loving and caring atmosphere! Everyone is so caring.”
l I PATCH FOR
l RARE DISEASE DAY
l #EYEGETDILATED – The campaign reached 52,975 people on social media
Comments from attendees
Ocular Melanoma Virtual Support Group Hosted 12 Meetings in 2019
“Dr. Eschelman took very complex treatments and presented them in a manner that was easy for patients to understand.”
l Hosted in partnership with Thomas Jefferson University Oncology Social Work Program
l Groups available for primary OM, metastatic OM and OM caregivers
Pediatric Melanoma RARE SUBTYPES
6TH ANNUAL PEDIATRIC MELANOMA SUMMIT September 27–29, 2019 | Chicago, IL
YOGA FOR KIDS & TEENS
PARTNER INSTITUTIONS INCLUDE:
NEW PEDIATRIC MELANOMA AWARENESS CAMPAIGN In September, Pediatric Cancer Awareness Month, we launched a month-long campaign including new social media content, patient stories and guest blogs from leading physicians and pediatric melanoma experts.
OPEN MIC NIGHT: TELLING YOUR STORY THROUGH MUSIC
MASSMUTUAL FOUNDATION AWARDED
MILES FOR MELANOMA
COMMUNITY SERVICE AWARD
the MRF a $25,000 Community Service Award in honor of MassMutual Great Lakes President and CEO Manuel Amezcua’s service on the MRF Board.
$1.1 MILLION RAISED BY RUN/WALKS IN 15 CITIES
ACROSS THE U.S.
NEW YORK GALA
THURSDAY, OCTOBER 17, 2019
EIGHTEENTH ANNUAL MELANOMA RESEARCH FOUNDATION GALA
Galas were hosted in Denver, Philadelphia, Chicago & New York City. $1.5+ MILLION DOLLARS RAISED l The MRF welcomed Katie Couric as emcee of the NYC Gala. l She had her annual skin check the morning of the gala.
Please join theMelanomaResearch Foundation (MRF) togetherwith special guestKatieCouric to celebrate the MRF’s reachover the last 20 years and honor individualswhohave shown extraordinary commitment to theMRF’s mission to eradicatemelanoma. Enjoy agourmet seatedmeal, cocktails and a silent auctionwithone-of-a-kind items, aswell as a specialperformance byRebeccaCherry, a critically acclaimed violinist, composer and melanoma survivor.
THURSDAY,OCTOBER 17, 2019 6:00PM – 10:00PM CIPRIANI 25BROADWAY NEWYORK,NY 10004 COCKTAILATTIRE
15 communities, 7,000 participants, 230 teams and 42 sponsors across the country raised $ 1.1 million for the MRF in 2019. Partnered with local dermatology practices to provide COMPLIMENTARY skin checks for participants in 12 of 15 locations.
TICKET INADVANCE: $500
CLICK HERE TOPURCHASETICKETS
HUMANITARIAN AWARD JeffreyWeber,MD,PhD NYULangoneHealth CUREOMVISION OFHOPEAWARD AlexanderN.Shoushtari,MD MemorialSloanKettering CancerCenter
GALACHAIR AnnaC.Pavlick,DO NYULangoneHealth
AUCTIONCHAIRS LoriNash SarahNashFinnie Gabrielle Jasper
COURAGE AWARD MarkMcAndrewBrown
LarainePirie HenrySeger DarylLynnPace (InHonorof)
DouglasBrodman RebeccaDreman JeffreyHarris TonyHendrickson AlisonMartin,MD BillReilly MarkWeinzierl
SteveSilverstein Chairmanof theBoard MichaelAtkins,MD ScientificAdvisory Committee,Co-Chair GlennMerlino,PhD ScientificAdvisory Committee,Co-Chair
JoeFazio Secretary GeorgeP. Jameson Treasurer StanAdler ManuelAmezcua
Debra and KennethCaplan Foundation
Robert J.Alexander EmilyA. Jones
Penelope,Tom, Timm,Kelly and
Through CommUNITY Fundraisers
l Every penny counts! Eight-year-old Bryson’s “Pennies for a Melacure” raised over $1,200! l One Change Bracelets made and sold by these young ladies in Florida raised $7,500 for the MRF!
Through Facebook Fundraisers by the MRF Community
l MRF has officially partnered with NFL teams including the San Francisco 49ers and the Jacksonville Jaguars. l Took part in My Cause My Cleats — Daniel Brunskill of the 49ers auctioned his cleats to donate the money to the MRF.
DC Wings of Hope Gala $220,000+ DOLLARS RAISED
Suraj S. Venna, MD, FAAD, Medical Director of the Melanoma and Skin Cancer Center, Inova Schar Cancer Institute received the Humanitarian Award.
THIS LIFE-SAVING WORK WAS MADE POSSIBLE BY YOUR GENEROSITY.
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